1. Early Age Onset Colorectal Cancer Activating Advocacy 1 st Never Too Young Forum June 9, 2016 Louisville, KY Louisville, KY Whitney F. Jones, M.D. KickingButt.org

3. CRC > 55 Incidence and Mortality Trends ~1990s 2011 CRC 50 - 55 EAO CRC Per 100,000 years

4. EAO CRC: On the Rise  64,068 cases between 1998 – 2007 reviewed  Increasing incidence Annual percentage change [APC] Annual percentage change [APC] Rectal cancers 3.9% (95% CI 3.1% to 4.7%) Rectal cancers 3.9% (95% CI 3.1% to 4.7%) Colon cancers 2.7% (95% CI 2% to 3.3%) Colon cancers 2.7% (95% CI 2% to 3.3%)  Median age for Y-CRC was 44 years, with most (75.2%) occurring between ages 40 and 49 years  Mucinous/signet cell pathology  Distal colon and rectum Yi-Qian Nancy You, MD, Archives of Internal Medicine, Letter, 2011 Cancer Epidemiol Biomarkers Prev.Cancer Epidemiol Biomarkers Prev. 2009 Jun;18(6):1695-8. doi: 10.1158/1055-9965.EPI-09-0186

5. EAO CRC vs CRC: disparity demographics  Nonwhite race/ethnicity (29.5% versus 17.6%, P<.001)  Uninsured or insured by Medicaid (16.5% versus 4.7%, P<.001) and who lived in the  Southern and western parts of the U.S. (56.2% versus 50.3%, P<.001)  Advanced stage disease Rectal 57% Rectal 57% Colon 63% Colon 63% Yi-Qian Nancy You, MD, Archives of Internal Medicine, Letter, 2011

6. What are the Characteristics of Under 50 CRC?  Average age diagnosed CRC is 71, giving the impression it's something that mainly affects the elderly,  CRC up by 2% annually in men and women under age 50 since 1992  Rectal cancer up 3.5% annually in men and 2.9% annually in women over same period. Now 20% rectal cancer are under age 50 Cancer Epidemiol Biomarkers Prev.Cancer Epidemiol Biomarkers Prev. 2009 Jun;18(6):1695-8. doi: 10.1158/1055-9965.EPI-09-0186

7. Predisposition Genetic syndromes FAP, HNPCC, etc Family history IBD EAO CRC Risk Factors SporadicWhoWhat/whereWhenWhy 30% 70%

8. “Founders Genes” aka Lynch Syndrome German immigrant family, Pennsylvania in the early 1700s. Movements of family from Pennsylvania through North Carolina, Alabama, Kentucky, Missouri, Iowa, Nebraska, Utah, Texas, and California Incomplete penetrance and variable expressivity Gene incidence may be much higher

9. EAO CRC Incidence and Mortality Behavioral factors CommunicationDisparities Public health Policy Late adoption to change Biological factors GeneticsEnvironmentMacroMicro Tumor biology +

10. Supply Chain of Cancer Prevention and Early Detection Research Awareness Screening EAO CRC?

11. 2010 2020 Genetic testing Improved Fecal Testing Behavioral Communication Strategy to Address Disparities < 50 Screening Strategies Risk Modification - Research Environmental Tumor biology Hybrid Screening Strategies Addressing EAO CRC 2013

12. Advocacy: Why? To create change.  Our priorities Prevention Prevention Early detection Early detection Treatment (advanced disease) Treatment (advanced disease)  Do our investments match priorities?  Do we accept a 10-20 year timeline?  Who is left out? Uninsured /underinsured Uninsured /underinsured Age 40-55 Age 40-55  What are our models? Cervical cancer Cervical cancer HIV/AIDS HIV/AIDS

13.  Where is our current national strategy on colon cancer prevention through awareness and screening?  Reaching too many people a little too early or Reaching too few people a little too late.

14. Advocacy To Create Change Advocacy To Create Change  Goals  Strategy Message Message Target Target  Tactics  Reduce unnecessary suffering/deaths from Y-CRC  P olicy Changes: Biological and behavioral research, C-change ( not incremental)  Engagement and persuasion, frame as disparity, survivors and stories. white papers  P. P. P. “A mind changed against it’s will is of the same opinion still.” W. Shakespeare

15. Who are our targets?  Patients  Providers Physicians Physicians Extenders Extenders  Systems Payers Payers Networks Networks NGO’s, advocacy groups NGO’s, advocacy groups  Guiding bodies ( ACS, USPTFS, etc)

16. Goals Regarding Y-CRC? Policy = Action  A policy from the USPTFS/ ACS/,societies that in support of the current screening strategy that the initial discussion of colon cancer prevention program begin no later that age 40.  A policy to immediately increase education to providers and the public of critical importance of BOTH: Timely family history + age appropriate screen Timely family history + age appropriate screen Early symptom evaluation Early symptom evaluation  A policy to increase BOTH resources and research in: Biological factors Biological factors Communication Communication Screening strategies for asymptomatic normal risk Screening strategies for asymptomatic normal risk

17. Communications Strategies: Unintended Consequences  “Earlier”  More asymptomatic people screened earlier than suggested age  Increase in diagnostic colonoscopy usage for GI symptoms  Increased costs with reduced cost effectiveness  Increased morbidity and complications from screenings  Current: 50  Importance of family history never discussed No up/out - reach opportunity  Lost educational opportunity regarding symptoms and risk Patient and provider less aware of symptoms or the need to promptly evaluate  No preconditioning for normal risk at 50  No reduction in 50-55yo age mortality  Average first time screen well beyond age 50

18. Hot off the press……..  National challenge to increase on time screening.  Lead time messaging and awareness Increased risk population Increased risk population Symptom + evaluation for sporadic Symptom + evaluation for sporadic Improve % on time screens for normal risk Improve % on time screens for normal risk  Addresses 75% of EAO CRC

19. Flush 50……..NOW  40 is the new 50  Hard stop educational intervention for all  Promotes current guidelines better  Advocacy can work again

20. The Rising Incidence of Young-Onset Colorectal Cancer: A Call to Action  Dennis J Ahnen, MD; Sally W Wade, MPH; Whitney F Jones, MD,4; Randa Sifri, MD; Jose Mendoza Silveiras, MD; Jasmine Greenamyer, MPH; Stephanie Guiffre, MPA; Jennifer Axilbund, MS; Andrew Spiegel, JD; Y Nancy You, MD, MHSc.  Mayo Clinic Proceedings, February 2014, volume 89, issue 2. 216-224

21. Personal Challenges from EAO CRC Health/wellnessPhysical/emotional A chink in the armor Frustration FinancesCosts Career implications InsuranceRetirement FamilySpouse Young children Reproduction

23. Y-CRC Categories  Predisposition  Genetic syndromes FAP, HNPCC, etc FAP, HNPCC, etc  Family history with early screen indications  Inflammatory bowel disease  Sporadic Who What/where When Why

24. Outline  Update on CRC Under 50  Changing the Trend  Making Impactful Change  Challenges to the Patient

25. Challenges and Issues Faced by Young Survivors  Health, money and family  Economic - costs and decreased productivity  Interacting with children  Reproduction  Implication for career  Life insurance  How to get your voice heard  More kid issues, reproduction, life insurance,  Being frustrated that this is a 50 year old disease in the minds of public health and the public generally

26. Colon Cancer Hits Younger Adults Especially Hard, Study Finds Risk of advanced disease, death greater than for middle-aged patients October 1, 2013 RSS Feed PrintRSS Feed Print TUESDAY, Oct. 1 (HealthDay News) -- Younger adults with colorectal cancer that has spread (metastasized) to other areas of the body have a higher risk of disease progression and death than middle-aged patients, a new study finds. Dr. Christopher Lieu, assistant professor at the University of Colorado.

27. More Deaths in Young Colon Cancer Victims  http://health.usnews.com/health- news/news/articles/2013/10/01/colon- cancer-hits-younger-adults-especially- hard-study-finds

28. …….Trending……… Fighting Colon Cancer: Saving lives + Saving money Madisonville, KY March 2013 Whitney F. Jones, M.D. KickingButt.orgkentuckycancerfoundation.org

29. The Overlooked Disparity “Young (Y) –CRC” Colorectal cancer under 50 CCA National Meeting October 11-13, 2013 Miami, Florida Miami, Florida Whitney F. Jones, M.D. KickingButt.org

30. Y-CRC incidence and mortality  Biological factors  Genetics  Environment Macro Macro Micro Micro  Tumor biology  Behavioral factors  Communication  Disparities public health  Policy  Late adoption to change

31. Empower and impact  Panel: An Under 50 Diagnosis: Up Close and Personal  Moderators: Martha Raymond, MA, Colon Cancer Alliance  Challenges and Issues Faced by Young Survivors Whitney Jones, MD, Colon Cancer Prevention Project  Participate in a discussion about the unique experiences that surround those diagnosed under age 50. Gather information about the tools available to these patients and how to best utilize these tools.

32. Unintended Consequences: Begin “Earlier” Communication Strategy  More asymptomatic people will want to get their screenings earlier than suggested age  Increase in diagnostic colonoscopy usage for non cancer GI symptoms  Increased costs with reduced cost effectiveness  Increased morbidity and complications from colonoscopy complications